Lily continues to amaze us. I hadn’t seen her in over 18 hours when I visited Thursday night. We had spent the day with Lily’s younger sister Charlotte and her Grammy at the county fair celebrating their mutual July 19th birthday. When I told Lily that Charlotte brought her back all the stuffed animals she’d won at the fair her eyes opened wider. And when I mentioned that I too love the movie “Ratatouille” (which was playing in her room at the time) Lily looked right at me as if to say, “You too, Auntie?” As I placed her “kiki” (her comfort blanket) under her left arm I looked up and her face scrunched up like she was about to burst into tears, and she did. It just about broke our hearts to see the look of sadness and confusion with tears running down her face — but at the same time nurse Penny (whom we L-O-V-E), walked in the room and said, “I think I really like this!”. My first thought was wow what an appropriate response for an appropriate feeling!! Although tough to watch, especially for mom and dad, good to see an emotional response. Lily became more vocal as Mom leaned in to comfort her, you can just tell that she is trying to let her mom and dad know she is not happy in that bed.
Another positive progression is that Lily has been able to calm herself down (without drug intervention) this is especially crucial to her brain and heart’s recovery. She has been off sedatives for 24 hours with the exception of a mild anxiety reducing and calming medication. The doctors are slowly weaning her off these types of medications as long as Lily can tolerate it. Again we take the approach two steps forward one step back and if she need future sedation in order to keep her resting and calm then they will do so. Lily will undergo feeding evaluations over the weekend with the speech therapist to see if she can chew and swallow. The goal is to transition from her nasal feeding tube to real food.
However it is early in her recovery and if she is unable to eat then she will receive a gastronomy tube (tube surgically placed through her abdomen directly) procedure probably early next week. Either way we know Lily will be happy to remove yet another tube, especially one that runs through the nose and down the back of the throat.
Again I pass along the message, Les and Jim can’t thank everyone enough for all the gifts and cards, I heard the nurses refer to Lily’s bed as Dr. Doolittle-ville.
Reminder of ways you can help:
- Visit the Needhams Helping Hands website and request to join our group of volunteers, we will need lots of help as they transition into long term care for Lily. Currently we are looking for meal deliveries to their home for the remainder of August.
- The Ronald McDonald Family Room, where we spend manyhours has a list of needs. We continue to help replenish the snacks Ronald McDonald House provide to all the parents and family who wait in the Family Room at PICUfloors of CHOC. The volunteers are so thankful for any support you can give.Please visit Ronald McDonald House You can email Lily directly by clicking here (emails delivered daily M-Th) Lily just received her first special delivery from the Child Life Department of printed out copies yesterday,